Where parenting and Asperger's Syndrome meet

Month: August 2016

How do children learn about the world? This is the issue dominating my mind right now, partly because fourteen-month Izzie is learning at an exponential rate and partly because I’ve ploughed through Sophie’s World over the last few nights and 3000 years of philosophy compressed into 400 pages is enough to make anyone’s head spin.

You can get really deep and complex and ponder the effects of sensory perceptions and experience versus the influence of innate cognition and primitive, pre-verbal mental reasoning. But if I’m not mistaken – which I might be as I haven’t really been sleeping – I’ve been able to reduce the entire field of infant learning down to three key processes:

Imitation: watching and copying;

Experimentation: fiddling until you’ve figured it out; and

Intuition: good god, how the hell did you know to do that?

Imitation is pretty simple. Since Izzie has seen us drink from cans, whenever she comes across one she lifts it to her mouth as though drinking. She does the same thing with deodorant cans, so it’s not a foolproof system, but the idea is right.

The good thing about imitation as a learning tool is that you don’t have to teach her – she just picks it up. Watching us press the pointy end of the pen to paper, whenever she gets her hands on a writing implement she now seeks out a newspaper, TV guide, or daddy’s book so that she can make lots of lovely little squiggles. Seeing us use the sponge to wash her face, every time I bath her now she grabs it off me, wets it, and washes my face – usually covering me with water. And when we tell her we’re going out, she grabs our shoes and tries to put them on our feet to help us get ready quicker – or not, as the case invariably is.

On the other hand, the bad thing about imitation as a learning tool is that you don’t have to teach her – she just picks it up. So when mummy playfully throws one of the baby’s cuddly toys at me, Izzie discovers that wonderful game called ‘throwing things at daddy’, but instead of limiting herself to soft, light toys, she thinks it’s all fair – books, coasters, wooden blocks, the kinds of things that really hurt when they connect with your shin bone, or elbow, or forehead. Likewise, because she sees daddy turn on his Xbox by pressing the on/off button on the front and hears a terribly interesting ‘beep’, at random times she’ll toddle over and press it – even if daddy has been playing a game for half an hour and hasn’t saved it! And because she sees Ozzie the dog chasing the cat around the lounge, for the last few days she’s been terrorising Korea (in case you’re wondering, she’s a rescue cat and that’s the name we’re stuck with).

Experimentation is a slightly more cerebral process. It’s all about taking an object and figuring out its intrinsic physical qualities. Whenever Izzie gets a new toy she starts out by bashing it against things (how heavy is it? What noise does it make?), proceeds to bite it (is it food? What does it taste like?), and then turns it all round and decides which is the most enjoyable way of interacting with it. So she’s gradually discovered that it’s more rewarding to press the keys on the piano thing we got her from a car boot sale (plinky-plonky style) than slap it or slobber all over it – although I kind of wish she hadn’t. And she’s discovered that if she pulls the oven door on her toy kitchen really hard, she can yank it off and then throw it at daddy – thus combining experimentation and imitation.

She’s also been using experimentation to discover how, if something doesn’t work one way, another way might produce a better outcome. Hitting her xylophone with the end of the beater that the string was attached to made a muffled thudding sound; now she uses the proper end and smacks the crap out of those metal bars with the volume and melody of a pneumatic drill. Drawing on paper with marker is all well and good, but drawing on her legs and/or dress gets a much more exciting reaction. And if she wants me to read her a book, she brings it to me and puts it on my lap, and if I don’t read it, she hits me with it, which is equally as fun.

You see, Izzie also experiments by varying causes to provoke multiple effects – a long-winded way of saying she tries various methods to manipulate her parents to get what she wants. Screaming, crying, stamping her feet, balling her fists – and if daddy doesn’t give in, she goes to mummy and repeats the process, and vice versa. She likes to point, to say ‘uh’ to indicate ‘that’, and failing that, to reach for it and clamber up on the furniture and move things about until she either gets it or gets given an equally attractive alternative. And if you’re walking in a direction she doesn’t want to go, she’s discovered that instead of resisting, screaming or crying, she can just go limp and sink down to the ground like a puppet with its strings cut, refusing to budge until you turn the other way, whereupon she springs into life like Popeye with spinach in his belly. Too clever for her own good, that one.

Which brings us to the final learning process: intuition. Or rather, instead of a learning process it’s more like a remembering process because I have no freaking idea how to explain some of Izzie’s behaviours beyond the possibility that past lives exist. These are the things she does that she has not witnessed so can’t be imitating, hasn’t experimented with, and by rights should not have the reasoning power or cognition to achieve.

Like a few weeks back when I drank a Coke from a glass bottle and left it with a few dregs in the bottom on my father-in-law’s lawn. A few minutes later, Izzie totters over, picks up the bottle, sees it has some left in it, carries it over to the table, pours it into a glass, puts the bottle on the table top, picks up the glass, knocks back the Coke in a single gulp, puts the glass back on the table and toddles off again. If there weren’t other witnesses, I would have doubted the evidence of my own eyes. We’re not the kind of people who pour drinks from bottles into glasses – we drink it from the bottle or else drink cans – so where did that come from?

Similarly, I was bathing her the other day when she picked up her mum’s lady razor from the side of the bath, and despite never having seen or touched one before, proceeded to shave my forearm. Had it not had the plastic cover over the blade, I would have an arm as bald as an Olympic swimmer’s. The thing is, holding a wiggly-handled lady razor is quite a skill for a baby, especially getting it the right way up and to then run it down my arm multiple times in perfect imitation of a person shaving – where did that come from?

My mum took her to a toy shop and after looking around for a few minutes, Izzie took a box off the shelf, lay it on the floor, and then pressed it repeatedly with her foot. So far, so normal, except that inside the box was a mat you put on the floor then press with your foot to make noises – so how the hell did she know to do that?

And the other day we gave her a yellow duster, and what did she do with it? Yup. Started dusting the surfaces. I can guarantee she’s never seen us do that before!

So here is my treatise on child learning: imitation, experimentation, intuition…unless my daughter is the reincarnation of a Coke-drinking, music-mat-playing barber who likes cleaning, in which case I’m not sure I can generalise using her as my case study.

Regular readers of this blog might have noticed that the frequency of posts has dropped off lately. For this I must apologise and explain.

In my core I am a writer. Ever since I was a child, four or five years old, I’ve wanted to be a writer. I always said I’d write a book one day, and then when I was eight I wondered what the hell I was waiting for and started. The result was Mystery of the Samurai Kidnapper. Needless to say, it sucked, but I was hooked.

I wrote all kinds of stories and read everything I could – action, adventure, crime, horror, science-fiction, war. When I was sixteen I began writing seriously, and at eighteen started sending samples to magazines and agents and publishers.

Skip forward eighteen years and I’ve written nine books, several scripts and dozens of short stories – over two million words of creative writing. I’ve come close a few times – I had a call from Ian McEwan’s agent once to discuss my novel The Butterfly Collection, and nearly nabbed an agent from Blake Friedmann for Beyond Wild, only to fall at the final hurdle – but other than a few short stories, I’ve been remarkably unsuccessful at getting into print. It goes with the territory.

But earlier this year I felt I was on a roll. I entered twelve writing competitions. Normally I just take a punt, but these were twelve of the best best things I’ve ever written – I actually thought that this time I had a shot.

Some were for short stories, some for the first 5000 or 10,000 words of a novel. I worked like a dog, polished them to perfection, then waited with bated breath. I hoped to win, but I knew I’d be happy just to be short-listed in one of them. It would make all the years of sacrifice worthwhile.

Over the past few months, the competition results trickled in, one at a time. And with each one, my hope and joy gave way to bitter disappointment. I didn’t win any. I wasn’t short-listed for any. I wasn’t even long-listed for any. It might sound like sour grapes, but that last rejection in early July crushed me.

Rejection is part of being a writer, and you have to be resilient. To put it into perspective, JK Rowling recently spoke of her pain at having Harry Potter rejected twelve times. When that last competition declared, it brought my rejection count up to 327.

As a father, I have to act happy for my child. I have to make out like everything’s fine and dandy and be the same as I always am. So I did. But inside, I was broken. It took all my focus and energy to hide it. The last thing I wanted to do was write this blog.

So I sat, and I festered, and I wondered if I would ever bother to write again.

But, to quote a cliche, it is always darkest before the dawn.

I’ve been awarded a publishing contract! It’s for a book I’ve written on living with autism, provisionally entitled AnAdult With Asperger’s: A Guide for the Newly-Diagnosed. It’s being published by Jessica Kingsley Publishers and will be coming out in the spring, and so I’m working around the clock to get the final draft ready in time.

As you can imagine, my mood and my self-esteem have both improved no end. I’ll try to keep posting every week on this blog as normal and I’ll keep you posted on the book as more details emerge.

I guess the moral of this story is: never give up, because you never know what’s around the next corner.

When you become a parent you make a decision: you decide you’re going to sacrifice your own needs in order to look after those of another. You commit to giving up your time, energy, sleep and even your life, if necessary, so that your child is kept healthy, happy and safe. And you swear you will do everything in your power to create a well-adjusted, confident, stable and successful human being.

When you have Asperger’s Syndrome, you have to make a further decision: I’m not going to let my autism stop me being a good parent, come what may.

There are a number of natural deficits that afflict parents with Asperger’s. We love routines and struggle to cope with change, two characteristics that don’t really lend themselves to looking after an unpredictable ball of poop and pee. Our rigid thinking and difficulties processing information impinge upon our ability to do the multitasking required for effective parenting. Problems with motor clumsiness make baby handling somewhat awkward, while sensory issues such as hypersensitive smell and hearing make nappy-changing a horrific burden. But none of these are insurmountable.

When I encounter sudden change, I grit my teeth and bear it, fight down the anxiety that rips through my insides, and recover later, after the baby has gone to bed. Since I get easily distracted and can’t multitask, all I do when watching the baby is watch the baby – I can’t watch TV, read a book, enjoy a coffee or even go to the toilet, and when we’re out and about I pay scant attention to the outside world, but that is the price I pay, and the decision I’ve made, to keep her safe. And when I change her nappy I hold down the disgust and queasiness, smile as though everything is fine, and get on with the job at hand.

More difficult for the Aspergic parent is understanding and meeting your child’s needs. Given our difficulties interpreting social communication and problems understanding how other people think and feel, we can be oblivious to our child’s emotional state and struggle to give appropriate support. Since we often have limited social needs we can fail to appreciate our child’s social needs and thanks to social phobia fail to provide for them. And because we struggle to understand our emotions we can have difficulties regulating our behaviour in front of our children.

Again, none of these problems are insurmountable. Just because we do not intuitively ‘get’ our children the way a neurotypical parent might doesn’t mean we can’t consciously learn to meet their needs. I get advice from other parents, books and the internet to understand my daughter’s developmental needs and how to meet them. I study her noises and facial expressions to work out what they might mean. I take her to social events, the fair, the park, to give her the opportunity to mix with other children. I know she’s looking to me for reassurance so I make sure I smile and act confident even though inside I’m on the verge of panic. Going forward, I will encourage her to communicate her needs and feelings in an open and honest fashion, and I will discuss them and adapt my behaviour to meet them.

My life as a parent with Asperger’s is all about lists, and study, and systems, and hard-thinking. I compensate for my natural deficits by using my intellect. Since I spent 28-years without a diagnosis masking my condition, I hide my problems from my daughter and refuse to let them stop me from being a good parent. It is hard, it is thankless, and it is painful, but it is the decision I chose to make when I had a child.

And it is working. At thirteen months my daughter is a bubbly, happy, confident, outgoing, highly sociable little girl who only wants to run around the park playing with children she’s never met and get involved in anything and everything that’s going on around her. She is in every way the very model of a healthy, successful human being despite having two parents on the autism spectrum.

So you can imagine my anger and disgust when, upon entering ‘parenting’ and ‘Asperger’s’ into a search engine, I was confronted by pages and pages of horrendous, prejudiced, discriminatory anti-Aspie bile.

There is a paper by a psychologist calling for parents with AS to be labelled with a ‘parenting disability’. There is an article saying an Aspergic parent raising a neurotypical child is ‘the definition of abuse’. Everywhere you look there are articles and opinion pieces about how bad Aspergic people are at parenting, and how all children of autistic parents suffer long-term psychological damage, depression and low self-esteem. It is inevitable, apparently, that our children will suffer lifelong difficulties as we are such failures as human beings.

Autistic parents, so says the rhetoric, are inhuman unfeeling monsters who are incapable of expressing love or meeting any of their child’s needs; we should have our children closely monitored and/or removed for their own welfare; and we place a massive burden on child services and mental health teams. And even if we think we’re doing a good job, we’re actually not – we simply don’t have the insight or self-awareness to realise we’re crap, abusive, emotionally neglectful parents. While it is rarely explicitly expressed, it’s hard not to get the impression that a lot of people out there think that people such as myself should not be allowed to procreate. As parents, people with AS are the proverbial lepers.

As a parent with Asperger’s, it’s hard not to be affected by such bigoted negativity. It’s hard not to let that negativity seep inside and colour your parenting experience. But the fact is, they’re wrong, so, so wrong.

True, some people with Asperger’s Syndrome will make terrible parents, just as many neurotypical parents shouldn’t have a dog, let alone a child. But because I know I have Asperger’s Syndrome, it makes me a better parent because I am constantly assessing and evaluating my behaviour and consciously adapting it to better meet my daughter’s needs. Knowing kids need to feel love and Aspergic people are rarely demonstrative, I make sure to express my love in demonstrative ways. Knowing children need to develop their self-esteem and Aspergic people are too honest, when she brings home a picture from school that I think is rubbish I will tell her how good it is and put it on the fridge. I will study, and sacrifice, and tirelessly toil to be the best damned parent I can possibly be because that is the choice I have made.

And I will fight for the rights of any other Aspergic parent who makes the same choice, because saying that people with AS are incapable of being good parents is the real ‘definition of abuse’.